Press Release
March 8, 2016

ANGARA LAUDS SIGNING OF RARE DISEASES ACT

Senator Sonny Angara has lauded the signing of the Rare Diseases Act which provides patients with rare diseases and their families improved access to comprehensive medical care, health information, and healthcare products needed to treat their condition.

"This new law expands the government's universal healthcare program to cover patients with rare disorders. I thank our good President and our colleagues, especially to the sponsor Sen. Pia Cayetano, for the passage of this much-needed measure," said Angara, one of the authors of Republic Act 10747 or the Rare Diseases Act.

A rare disease, also known as orphan disorder, is any health condition resulting from genetic defects that rarely affect the general population. Rare diseases are often chronic, progressive, degenerative, and life-threatening.

World Health Organization (WHO) data shows that there are 7,000 known rare diseases which mostly affect children.

In the Philippines, a disease or disorder is considered rare if it affects one in 20,000 individuals, as defined by the Institute of Human Genetics of the National Institutes of Health, University of the Philippines Manila.

The maple syrup urine disease, mucopolysaccharidoses II, and the Hunter syndrome are among the most common rare diseases in the Philippines.

"Since these diseases afflict only a small number of people, there is a glaring lack of health practitioners who are experts in the field. There were even cases of incorrect diagnosis. Such a situation makes treatment, often life-long, costly and far beyond the reach of most Filipino patients," the senator said.

The Rare Diseases Act mandates the Philippine Health Insurance Corporation (PhilHealth) to include the cost of treatment of rare diseases in the benefit package, and to direct provisions from the sin taxes collection to cover the cost of care for patients with rare diseases.

Under RA 10747, patients with rare disease will also be considered as persons with disabilities and will be granted benefits and privileges such as priority programs and discounts as mandated by the Magna Carta for Disabled Persons.

In addition, it seeks to create and maintain a Rare Disease Registry that will contain data on rare diseases in the Philippines, patients afflicted with rare diseases, and orphan drugs and products.

"This data will be utilized in formulating policies, identifying program interventions and designing researches that will eventually address the needs of patients with rare disease," the lawmaker explained.

The new law also provides regulatory and fiscal incentives to support research and development studies on rare diseases and to facilitate the manufacture and importation of affordable orphan drugs and products.

"We are hopeful that the passage of the Rare Diseases Act will lead to better treatment and prevention for these types of diseases," Angara said. #

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Tagalog version

Pinagtibay ng Pangulo PAGPASA NG RARE DISEASE ACT, PINURI NI ANGARA

Sa wakas, mapagtutuunan na ng kaukulang pansin ng gobyerno ang mga pangangailangang medikal ng mga taong may kakaibang karamdaman o rare disease.

Ito, ayon kay Senador Sonny Angara ay matapos pagtibayin ni Pangulong Aquino ang RA 10747 o Rare Diseases Act na magiging daan upang mas maging madali sa mga pasyente at sa mga kaanak nito na makuha ang mga nauukol na gamot, mga impormasyon ukol sa taglay na karamdaman at health products para rito.

Dahil dito, ipinaabot ng senador sa pangulo ang kanyang papuri at pasasalamat sa pagpapatibay ng bagong batas, partikular sa sponsor ng bill na si Sen. Pia Cayetano.

"Sa pamamagitan ng batas na ito, mapalalawak na ng pamahalaan ang kanilang pangkalahatang programang pangkalusugan at masasakop nito ang pangangalaga sa mga pasyenteng may rare disease," ani Angara, isa sa mga awtor ng naturang batas.

Ang rare disease na tinatawag ding orphan disease ay isang kondisyong medikal na resulta ng isang kakaibang karamdamang maaaring namana sa malayong kaanak ng pasyente na may ganitong depekto sa sistema ng kalusugan. Kadalasan, malubha ang depektong ito at maglalagay sa panganib sa isang pasyente.

Sa datos ng World Health Organization (WHO) sa halos 7,000 kaso ng rare diseases sa buong mundo, malaking porsyento ng bilang na Ito ay pawang mga bata.

Sa Pilipinas, base sa pag-aaral ng Insitute of Human Genetics of the National Institutes of Health ng University of the Philippines, maituturing na rare disease ang isang karamdaman kung sa kabuuang 20,000 katao, isa lamang ang nagtataglay ng kakaibang sakit.

Kabilang sa rare diseases na ito ang maple syrup urine disease, mucopolysaccharidoses II, at ang Hunter syndrome na masasabing common rare diseases sa bansa.

Sa ilalim ng Rare Diseases Act inaatasan ang Philippine Health Insurance Corporation (PhilHealth) na isama sa benefit package nito ang halaga ng mga gamot para sa rare diseases. Magmumula sa koleksyon sa sin taxes ang gugugulin ng pamahalaan para mapunan ang mga pangangailangang gastusin sa mga kakaibgan karamdaman.

Sa naturan pa ring batas, kahanay ng mga taong may kapansanan ang mga pasyenteng nagtatagaly ng rare disease/s kaya't maging ang mga ito ay sakop ng mga benepisyo at pribilehiyong ipinagkakaloob sa PWDs tulad ng priority programs at discounts base sa probisyonng nakapaloob sa Magna Carta for Disabled Persons.

Iniaatas din ng bagong batas na magkaloob ang gobyerno ng regulatory at fiscal incentives sa mga pananaliksik at pag-aaral sa rare diseases upang pangunahan ang paglikha at importasyon ng orphan drugs na abot-kaya ang halaga.

"Umaasa tayo na dahil napagtibay na ang batas na ito ay mas magiging solido na ang mga hakbang upang di man maiwasan ay mapigilan ang pagdami pa ng bilang ng mga kababayan nating apektado ng rare diseases," ayon kay Angara.

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